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Sunday, December 5, 2010

Unfinished


Part of the problem with being premature is that most people see a tiny baby. What they forget is that a premature child is not just tiny, that baby is in essence, unfinished.

For example, when Charlotte was born, her ears were just flaps of skin. There wasn't anything that "formed" an ear. I've watched her eye lashes and eye brows grow in. We often comment that she was a much easier stick (for blood draws) when she was see through. Charlotte has scars from where monitor leads tore open her skin in those first few weeks. She was so sensitive, her "hands on care" was scheduled, so that all physical contact could be done at once.

What's sometimes forgotten is that it's not just her eye lashes and her ears that need to develop more. It's her lungs, her eyes, her brain, her skin, her organs, her everything. And since a premature baby, especially a micropreemie, is taken from that perfect environment for development too early, it takes a long time for them to catch up.

Most families know of the "six week" guideline for newborns, aka, keep your baby inside and away from crowds for about a month and a half. (Full disclosure, I totally ignored that with Caleb-- I know, mother-of-the-year here. Took him out in public about three days old. In December. RSV anyone? Awe.some.) With Charlotte, we are advised to keep her from large gatherings until after her second winter. At least. See? A long time to catch up means two years vs six weeks.

Since these babies come into the world in a rather incomplete state, their immune systems are practically non-existent. Charlotte's doctor has absolutely forbidden us to have anyone in our house that doesn't have a flu shot. Her reason? It could very easily kill Charlotte. Not make her sick for a week or two, not put her in the hospital, but kill her. It wouldn't just make her "oh my baby is sick and I haven't slept for a week" kinda sick, but "on the ventilator and in the PICU fighting for her life" kinda sick. Think I'm being dramatic? Read this family's story. And Charlotte has had her own flu shot. In fact, her insurance spends about $1,000 every four weeks giving her a shot that will help protect against RSV.

Premature children also have a difficult time keeping up physically as well. Since they were taken from the amniotic fluid so early, which is where the majority of bone development and nervous system development occurs in children, they tends to be delayed. It is not uncommon for a micropreemie to learn to crawl at two years old, and learn to walk by their third birthday. It's a fairly real possibility that preemies will need medical devices to help them learn to sit up, walk, eat, roll over, stand, etc. It's also not uncommon for preemies to meet developmental milestones out of order. For example, a preemie might be able to walk before he can stand up on his own. The core strength that it takes to stand still might be too much for him, even though he can stay upright while moving.

Among many other unfinished parts of preemies is their parents. We're kinda crazy. It happens. When you've watched your child develop right before your eyes, it changes you, in a way I can't fully explain. Keeping your child safe is more than a parenting aspect, it becomes a full time job. And sometimes, we see it that way. We forget that others haven't spent hours upon hours researching conditions, treatments and outcomes. We forget that our children are also cousins, siblings, grandchildren, nieces and nephews. We forget that we're allowed to simply be a mom or dad. We spend so much time being nurses, therapists, doctors and researchers, that we forget what it can be like to just rock your child to sleep.

Because just like Charlotte's skin at birth, there's a part of us that is still raw. Still fragile to the touch, still too delicate. Eventually, that part of us will heal, just as Charlotte is now. But our development is delayed, our progress can be stunted.

Micropreemies and their parents-- we're all just a little unfinished.
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8 comments:

  1. This is an absolutely beautiful post. It explains so much, and if you don't mind, I'd like to reference it on my blog.

    I feel unfinished too, and I am trying to work through it every day.

    Charlotte has been an inspiration to me ever since she was born, and you gave too.

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  2. What a wonderful post! I'd like to share it on my blog as well.

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  3. Feel free to repost anything! Just link back to the blog so people can get the whole picture :) Thanks!

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  4. So, so true. Almost two years later and I still feel so raw. The fear of her getting sick is constant still.

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  5. beautiful. beautiful. beautiful.

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  6. Hi, I work with the Organization Angels In Waiting and we were wondering if it would be okay to use your photos and stories about your beautiful child who was born prematurely, to share with society that these are living breathing human beings that can live. Please contact me at TimmerieMillington@yahoo.com .

    See our website: http://www.angelsinwaitingus.com/aiw.html

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  7. Thanks for helping me understand a little better. I'm so glad Charlotte is home. We love you!

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  8. Amazing post! A friend posted your blog on FB. I can relate, I have a micropreemie daughter, she is 19 months and is doing amazing but doing things at her own time. We were homebound our first year and just found out she doesn't qualify for the RSV shot this year so we are homebound once again. Ailyn is still very tiny, and about 4 months behind her adjusted age milestones. But, we are very proud at how far our nugget as come. Thank you for posting this.... being a micropreemie Mommy/Daddy is not easy.

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